Replies to This Discussion

Permalink Reply by Germaine M. Leroux on June 28, 2014 at 11:36am

Hello,

I am not going to pretend and say I understand exactly how you are feeling because I have not walked in your shoes. Clearly you just want to live your life and be free of worrying about your hair. I don't know what state you live in but I strongly recommend you contact www.peggyknight.com all the best to you and if you need help rasing fund to purchase a wig check out www.gofundme.com Whatever you do please do not give up! life to precious and we are all cheering for you if you ever need a friend please contact me!

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Permalink Reply by andrea t on June 28, 2014 at 3:30pm

I am not saying this lightly because the bottom line is, alopecia is tough. But, I have come to realize late in life that attitude more than anything is the most important factor in overcoming being "different". I have alopecia and wear a wig but see women walking down the street totally bald, heads up,who appear very confident. In other words, they wear their baldness well and I would guess people react more casually and accept it more readily. I was a very self-conscious teen and had no idea I had a right to stand proud. I withered anytime anyone said something. I let them rule. My own feelings of inadequacy rules me. I now know it doesn't have to be that way, although it may think that it does. You may feel you've lost some of your social status, and that is true in a way, but it is your attitude, in the end, that will determine your quality of life. There was a photo that included a bald woman in her 20's in a NY Times article about real estate. It showed her and her boyfriend and his young daughter in their Brooklyn apartment. She, obviously, was leading a good and "normal" life, without hair. It was due to her attitude, I'm sure. Adjusting to a major (negative) change and, over time, overcoming it is possible, as long as you learn not to sell yourself short. That means you have to come to believe you are valuable, despite not having hair. 

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Permalink Reply by Elizabeth on June 29, 2014 at 3:06am

I definitely understand completely what you are going through even when I was in elementary school I had been "gifted" with alopecia areata and I eventually lost all my hair. I mean I was already freaking out because it was my first year of high school but now 2nd semester I had to begin wearing wigs because I had lost all my hair. It was a very hard tradition because my first wig was bought at a local wig shop and want the best quality. I am now going to be a senior in high school and currently get my wigs from hair club for Kids they are completely free all the way until you are about 17 or 18. They are great and look soooo natural you would never know the difference:) it's applied with this type of tape that you could literally do cartwheels and it won't go flying off . Hope this helped and I wish you so much luck.

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Permalink Reply by kimberj on June 29, 2014 at 2:31pm

Hello! I am so sorry that you have been affected by Alopecia at such a young age. I completely agree with you and how you feel. I too get very frustrated when others tell me that it doesn't define me. Another one is that I should be happy cause other people have far worst illnesses than I do. I don't need people to tell me how I feel. I know how I feel!! I have had small bouts of Alopecia my entire life. Usually a small bald spot here or half a missing brow from time to time. That in itself was hard to deal with but two years ago at the age of 36, my hair started coming out by the handfuls. I tried very hard to hide it. I would visit the dermatologist once a month for steroid injections. I started vitamins, changed my diet, and did everything I was told to do. My condition only worsened. Two years later and I have total hair loss except for my lashes. This past year has been hell for me. In November, I knew I was going to have to make a decision on what to do about the rapid balding so I made an appointment to have my hair cut super short. I cried uncontrollably that day. Eventually, I grew to like my new do, but it just coming out. Within two months my hair had fallen out so much that I resorted to shaving it Mr.Clean bald and wearing a wig. I would cry every single day and covet everyone's hair. I would see a shampoo commercial and start crying. Let's just say that for 3 months I was in the worst depression I have ever experienced in my entire life. I joined Alopecia World to have some support and comfort of knowing thousands of others were experiencing the same thing I was. This helped only a little. I was very happy for the people who could accept their illness and NOT let it define them but I was not ready to go into the world and rock a bald head. I am still not ready to do so. What I can tell you is, on my own terms and in my own way, I have begun to accept it. I have started to crawl out of my hole. I have begun to go wigless when I am at home. I will even do yard work in a ball cap. I will not tell you that you are beautiful, though I am sure you are. I will not tell you that what is on the inside is all that matters. I won't even tell you that what other people think doesn't matter. All though this is all true and really good advice, it doesn't change anything about how you feel or what you are experiencing. What I will tell you is that you WILL be happy again! You will find someone who will love you for you, even with the alopecia. You WILL find acceptance of Alopecia but YOU will have to figure it out for yourself! One of the best things I ever did was tell all my family and friends. I spent so much time and effort trying to hide it from everyone!. I knew it wasn't something to be ashamed of, but I felt like a freak. I also didn't want everyone feeling weirded out or sorry for me. Now that everyone knows, I feel so comfortable to be around them. I enjoy going out and doing things again. I still have a LONG way to go, but I am working on it. I still will not go out in public without my wig. Who knows, maybe one day. My point is, many people can tell you many things, but it doesn't change how you feel about yourself! My husband, family, and friends did and still tell me I'm beautiful. I, however, did not see or feel the same way. Through my own journey of acceptance, I have begun to feel ok. I certainly hope your journey is a short one and I will be rooting for you.

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Permalink Reply by Seejee on June 30, 2014 at 3:46am

hi dear.

i read this and it sent me straight to the years of my childhood. i was diagnosed with alopecia areata when i was 6 years old. i am 24 now and back then some doctors let alone people didnt even know what it was. i was put on a lot of trial method therapy and drugs to see if they helped and it didnt. from the age of 6 till i was 11 i had huge bald patches of hair on my head and for a little girl already suffering with asthma and eczema it all also took a toll on me.

i understand exactly what you mean and no matter what others tell you about self worth and you pretty from the inside it just doesnt correlate with the stage of life that you are at now. when i was in grade 9 (here in south africa grade 9'ers are around 14 years old) and my hair started falling out again. that was when i could probably say was the worst period of my schooling life. everyone was developing into gorgeous women here i was with hardly any hair, bad skin and no hope for any rescue.

i am sorry that you have to bear what these kids do this to you and i hope one day when they grow up they realize what a bad thing they have been doing. 

while i was at school i would cover up my head with a bandanna/ scarf and my teachers, close friends and school principals were very supportive, luckily. 

up until i was around 21 years old my hair started falling out less and guess what by 22 i have grown back almost 75% of my hair!!! 

i hope in these few words you find some will and inspiration and if you ever need to talk i am willing to respond any time. back when i needed support they werent much people around and im glad there is a support portal now. Having had many complications throughout my life i assure you it has made me grow up into a very strong willed, determined and soulful person. i wish the exact same for you. 

a big huge hug from me to you.

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Permalink Reply by momoftwoboys on June 30, 2014 at 8:24am

DoneWithEverything-

I just asked to be your friend...I would like to talk to email you about all of this.   I lost all of my hair in 6th grade...everything.  I am 35 now and I still wear a wig.  It will define you, but you get to choose HOW it defines you.  Are you going to let it take hold of you or make you stronger?  Don't get me wrong, there are days that I still cry about it, but I also know I wouldn't be where I am today without it.  My life is great...I have an awesome husband who totally embraced this and two beautiful boys.

I would like to tell you how I handled things during middle/high school...college, etc....I hope to hear from you soon.

 

MomOfTwoBoys

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Permalink Reply by Susan Vreyens on June 30, 2014 at 2:51pm

Sweetheart, I just cried when I read your post. I am so sorry that you have to go through this. Know that there are people out there and you are not alone. Thank goodness that we can at least reach out to each other via the internet.  I am the mother of a now 17 year old boy who lost almost all his hair when he was 12. He too had some horrible experiences at school. He chose to wear a beanie hat and kids used to take it and throw it around the room and call him "alien" and "freak". That was five years ago and he is just now starting to conquer those past experiences-I think it is fair to say that he had PTSD, post traumatic stress disorder for quite awhile. It is not necessarily easier for boys than girls. I suppose if he could go totally bald, he would, but even if he shaves, the "shadow continents" still show, so he is not comfortable with that. He too looks in the mirror and sees an ugly person even though of course as his mom nothing could ever make him ugly to me. To me he is my handsome boy and always will be. Know that the people in your life who love you also feel the same-you will never be ugly to them. I pray that you will grow and be able to come to a place where you can get past this and it may well be one of the hardest things you ever do. People say "oh it's just hair; get over it" and that shows how much they don't know. It is weird how extremely and deeply the loss of ones' hair can effect your sense of self worth. It might be best to get through these hard times with a wig. They do make the most amazing ones now that "vacuum seal" to your head-no little shit in the hallways at school will be able to chase you down and pull it off of your head. They stay on in a windstorm. They can be a bit pricey, but I did know one other girl at my son's high school who had universalis since she was 8, and she wore a wig that looked totally natural and nobody really even knew. She was able to do sports even with it on. Also another thing you might think about is maybe doing online school for awhile. My son did that for a year and just stayed home and "hid." As parents we weren't sure if we were doing the right thing letting him do that, but in retrospect it seems to have helped. You need time to heal. It is just adding more stress to have to pretend everything is ok and you are just a normal teenager, when you're not. You're a teenager who has had a terrible thing happen and you need time to learn how to deal with it. We think it shouldn't be so serious because alopecians aren't technically "sick", it's not like you have cancer or something. In every other way you are totally healthy, but I know the emotional and spiritual pain you are going through right now. Please stay strong-every flower has a right to be blooming and you are a beautiful flower now no matter what you think when you look in the mirror. 

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Permalink Reply by Mary on July 1, 2014 at 9:43pm

Hi....I'm not going to sugar coat this...alopecia sucks! I have suffered from it since 10th grade. I never fully lost my hair until I was about 26....and let me tell you....wigs and insurance have come a long way!! Get the best wig your insurance allows you to buy. Great hair is something we all take for granted until you have none or for some....never had. I lost my eyebrows and eyelashes at 36 and had completely lost all my hair...my head was as smooth as a bowling ball and I had patches missing on my arms and I barely had to shave my legs. The loss was devastating. The 110 eyelashes by ardell were the best eyelashes....I became a pro putting them on....but not without alot of frustration and tears....practice over and over and you will get it down to a science. I powdered my brows on....never got it perfect...but it looked better than nothing at all. There are so many great options out there now ....research and you tube instructional videos. I get my hair from cherlynn international right on the web. The follea hair is beautiful and so natural that no one at my work even knew I wore hair...other then a couple of people I chose to tell. I always took my hair off as soon as I got home and relplaced it with a baseball cap....always self cautious. I know some can leave the house with out anything and feel secure but I have never embraced my baldness. I envy those that can. I'm now 43 and over the last couple of years my lashes are all back and fuller than before....my brows are back...super light but they are there...and 90% of my hair is back and long enough for a pony tail. I started taking biotin 500mg daily ...it's a natural supplement for hair and nails and I fit some sort of exercise into everday...cut some starch out of my diet and feel better than I have in a long time. Don't waste your time with steroid shots and cream....they don't work. Keep the faith and find products to help you feel like yourself again. Nobody will ever fully feel your anguish...you have to find your inner strength and keep on trucking!! :-)

Best,
Mary H.

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